Little heroes – Emily and Luke

Emily and her little brother Luke, who both star in Episode One of Paul O’Grady’s Little Heroes, were both born with cystic fibrosis – a life-long genetic condition where their bodies overproduce mucus that fills up their lungs and complicates other organs. They have been regularly attending Great Ormond Street Hospital (GOSH) ever since they were born. Their mum, Juliet, shares their story…

The start of a journey

“Before we had Emily, my husband Aries and I didn’t even know what cystic fibrosis was, let alone that we were both carriers for the condition. Even then, there’s only one in four chance that you will pass the condition on and your child will get it. Both our children did.

“I’ll never forget the day a nurse from GOSH arrived at our house to tell us that Emily had cystic fibrosis. She sat there and talked it through with us. Then immediately we were on this journey with a team of people from GOSH that we’d never met before. At that time, we didn’t quite understand how important they were going to be in our lives.

“Along that journey we had Luke and he was also diagnosed with cystic fibrosis and the team at GOSH became even more important. They supported us, were always available to answer our questions and help my husband and me understand cystic fibrosis at a rate that’s comfortable for our family.”

Daily life with cystic fibrosis

“There’s no cure for cystic fibrosis. It’s not the type of condition where you go and get treatment and that’s it. It’s never going away – there’s no cure, it’s a chronic illness, and it doesn’t necessarily get better. It’s very much managed in everyday living, so Luke and Emily must keep a strict maintenance routine to keep their lungs healthy.

“We do physio in the morning before school and in the evening when they come home. It can be monotonous, but we try to make life with cystic fibrosis as fun as it can be. We get them to jump outside, use fun balls, play games, and get involved in social activities that are good for their health, like football and gymnastics. All these activities help loosen the phlegm, so they can cough it up.

“There’s no ‘off button’ and there’s no day off because what we do today is going to impact how they live in ten years’ time.

“This year for her birthday, Emily asked not to do physio. That’s what she wanted as a present – it broke my heart. But as much as I wanted to, I couldn’t give her that gift.

“Emily and Luke have cystic fibrosis, but that’s just one part of them. And it’s only one part of our family. I don’t want them to ever question whether their condition will stop them from doing something.”

Our GOSH family

“GOSH is really our home away from home. Emily is admitted every four months for a two-week stay. She’s given a strong antibiotic medication that helps strengthen her body. Her and Luke also have other intensive treatment, physiotherapy, and lung function tests, which asses their lung capacity. We do that every day – the huffing, puffing, jumping and blowing – it’s about keeping their lungs clear of that phlegm.

“We’re in the hospital quite regularly for assessments and appointments, but it can be quite tricky balancing both their needs and being in two places at once. Emily is now able to do some of the tests at home so it’s easier to manage.

“But she looks forward to coming to the ward as she’s very close to Lizzie, the play specialist. Emily calls Lizzie her twin because they have curly hair and they’re both crazy! She’s been on this journey with Emily, and Emily sees Lizzie as a safe pair of hands and a friend.”

Mixed emotions

“As a parent, I worry – about whether they’re eating well, doing well at school, making good friends. Sometimes it feels overwhelming, but then I look at them. I just think it’s going to be okay and you get on with it. There are always going to be challenges along the way, but I wouldn’t change anything. Cystic fibrosis makes Emily and Luke unbelievably unique in how they see the world. We’ve met some of the most amazing professionals and families along the way.

“In no way could we as a family have managed without the continuous care, support, kindness, friendship, empathy, understanding and skill of the team at GOSH. And it’s not even the high-level consultants and specialist nurses, it’s everyone.

“Each of them has helped build this community for us, a community that holds all the weight with us so we’re not alone. Every experience we’ve had at GOSH comes with a mixed bag of emotions, but there are just so many people around to support you. And we and the children could never have managed without that support.”

Starring in Little Heroes

"We loved being on the show as a family. The children enjoyed sharing the story and of course, I love to share how brave I think my children are. It was also really exciting doing the filming and planning and preparing.

"We want to support GOSH as much as we can as we get so much from them. Being part of this documentary helped us to help them. I want to show what it is to live cystic fibrosis every day, despite still looking healthy and strong, but also that you can achieve all that you would like to achieve. It offered a positive experience for my children around their medical needs and it was rather exciting and fun!

"It was great filming with Paul at GOSH and celebrating with the children at the gymnastics competition to see them win their gold medals! He genuinely cares about what the children and us as a family have to manage. The children loved him. He was able to connect with them so quickly and easily. It was such a positive experience for us all. “

Find out more about Paul O'Grady's Little Heroes.

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